Mom has ‘high hopes’ for son’s complex medical care

NYGH opens pediatric clinic

Mom has ‘high hopes’ for son’s complex medical care

Baby Ryan has had one health complication after another since being born extremely prematurely last April.

Born at 24 weeks, just over half the normal gestation period of about 40 weeks, he came into the world after his mother’s placenta separated from her uterus.

Although a little fighter, Ryan has lived with serious health concerns since his birth, including problems with his breathing, heart, immune system, his ability to eat and possibly his hearing.

“It’s been challenging from the beginning,” said his mother Kerri, who did not want her or Ryan’s surnames published.

“The last eight months have been very difficult. There are a lot of unknowns.”

Ryan’s life so far has been a whirlwind of appointments and treatments, with different medical professionals in different locations sometimes providing confusing or conflicting information.

Even when a treatment plan is worked out, it can become outdated as new challenges arise, Kerri said.

But, hopefully, that’s all about to change.

Ryan was the first-ever patient treated at North York General Hospital’s pediatric complex care clinic immediately following the unit’s grand opening last Friday.

The clinic acts as a one-stop centre providing care and coordinating treatment for children with complex medical conditions such as extremely premature birth, cerebral palsy, genetic disorders, congenital heart disease and for youngsters who do not yet have a clear diagnosis.

Young patients are seen by a pediatrician, pediatric nurse practitioner, occupational therapist, dietician, social worker, geneticist and a coordinator from the Community Care Access Centre.

The team partners with the child’s own pediatrician or family doctor, specialist and other health care providers.

The clinic also works in partnership with the complex care program at the Hospital for Sick Children.

It was at Sick Kids that Kerri found out about North York General’s new clinic.

She’s looking forward to having a place closer to home where Ryan can be treated and have his care coordinated.

“I have high hopes for the clinic. I hope it can take some of the guesswork out (about his care),” she said.

“I think there are a lot of parents with kids like him who don’t know how to find resources.”

The clinic, which has 10 patients lined up, will care for young patients with complex needs that had been falling through the cracks, said Cathie Badeau, program director of the hospital’s child and teen program, and pediatrician Dr. Ronik Kanani, who also works at Sick Kids.

While the patients were receiving medical care, their parents were often forced to shuffle from pillar to post across the Greater Toronto Area seeking treatment for their children and trying to understand complicated and sometimes contradictory information, they said.

“For the family, it is very concerning. They are seeing many physicians telling them slightly different things,” said Kanani, adding community doctors often don’t have the time needed during routine visits to devote to patients with extremely complex illnesses.

“I think they get care. But it’s often fishing (for different resources and families face long) wait times. It is frustrating.”

While the patients will continue to see other caregivers, the clinic will provide treatment, coordinate care with other medical professionals and work with families to develop short- and long-term health goals.

The patient’s complex care plan, developed with input from families and medical staff, will be updated after each visit to address the patient’s ongoing challenges and developments, Badeau said.

The clinic will also help reduce duplication of services because some patients now see more than one occupational therapist or dietician, for example, she said.